How CIRS Changed My Life

Posted December 08, 2015

I recently had a brief conversation with a woman who’s been diagnosed with Chronic Inflammatory Response Syndrome (CIRS). One of the questions she asked was how CIRS had changed my life. In response, I thought to myself, “Gee, how has CIRS not changed my life?” It seemed like a huge question. Over time, ideas popped up and I jotted them down on a scrap of paper.

Given that the Holidays are upon us, I thought now might be a good time to present them in an article as a way of sharing a little goodness with you all. Also, I’m hoping that others will contribute to the list in the Comment section below. I know that everyone has some interesting points to add to this list. I’ll begin my list with the more practical side of CIRS that relates to the essentials for recovery and progress into more esoteric and thought provoking changes that I’ve seen in myself.

Everything Is Cleaner

I clean a lot more lately. It started when we learned our house was moldy and I made the bold (maybe even foolish) decision to remediate the house. We’ll see. The “jury is still out”. All the carpeting came out, fabric furniture went on the curb, we remediated the mold following a detailed plan, and then the emptied house was meticulously washed. This process concluded with flushing massive amounts of fresh air through the building. Proper remediation is a laborious and detailed endeavor that I hope to eventually find the time to write about.

On top of that, given that we live in the woods in Wisconsin, autumn brings on symptoms. HEPA vacuuming, HEPA and carbon air filtering, pleated window filters that clean incoming “fresh air”, and a UV-C air purifier of my own design (more in an upcoming article) is my response to these problematic airborne toxins. In addition, I regularly check the lid and back of toilet tanks, under sinks and appliances, roof flashing including gutters, and so on for even the slightest hint of a problem.

Healthy Diet

When I was building houses, I used to eat a bag of Doritos and drink a couple sodas for lunch. No wonder I ended up taking naps outside in the middle of winter. I’d lie down and pass out at the base of a wall I’d just put up that conveniently acted as a wind-break. Good golly, I was clueless. Now I eat a tiny amount of carbs (a recent glucose test came back positive for SIBO) and lots of high quality, organic meats and vegetables. When I was a kid, I used to dump tablespoons of sugar on Frosted Flakes. Now I eat frozen sweet peas and pine nuts for a treat. I’m so much better for these changes.

I’m still trying to convince my “sweet tooth” (due to an imbalance in gut flora) that this is all for the better; I still have cravings. For me, diet has been huge and I’m still learning how impactful it can be. Yesterday I had too many sweet potato chips for a treat and consequently walked around in a stupor for the rest of the day. CIRS suppresses MSH and this in turn messes up the gut.

Reduced Stress

I used to be a “knucklehead”. I worked full time teaching Mathematics at a local High School and built houses in the evenings. I couldn’t work hard enough and for that time, it made sense. Now I’m doing physical work 1-2 hours a day and spend the rest of my time in front of a computer screen. Part of this change is a result of not being able to work at all for years and the entire shift in focus that happens as a result. Since I broke down near the end of a building career, I’m now well into my 50’s, it was time for a change anyway.

I’m sure for everyone this will be different, but I suspect one constant for many is a deeper appreciation for the fact that there’s more to life than work. Having been really sick, I’m so much more sensitive to when I’m stressing out my body by either what I’m thinking (like the go-go-go attitude I used to have) or by over working my body – no more brute force. Stress tears a person apart and I’m careful to be much kinder to this body and Spirit.

Less Travel

My wife and I have traveled the world. The last real work I did was running a construction site in India building a Buddhist Nunnery for woman that were so inspired but otherwise wouldn’t have had a place to follow their spiritual aspirations. In contrast, today I’m careful about the local shops I enter. I make detailed lists so I can minimize my time in stores. When I get home, I change clothes and rinse my short hair.

Over time, I’ve learned which stores are worst and I avoid them. Even still, the chemical onslaught isn’t ever good for me. Ah yes, I’ve gone from shoveling over a ton of molding sand over my head every day when I was in my twenties working in the incredibly toxic environment of a foundry, to taking a different route through the store to avoid the soap isle and being careful not to do too much. Maybe the chemicals always affected me but I sure notice it more and it takes much longer for me to clear symptoms.

Dealing with Naysayers

I had a recent conversation with a dear friend who suggested that maybe I just needed to stop being so wrapped up in my efforts to get better. My response was to ask him what specifically he was referring to and what data he had to support this position. There’s lots of data to support the contention that biotoxins from mold and other sources is a real problem. Dr. Shoemaker has statistically shown that the body becomes inflamed and that this then leads to all sorts of adverse health effects including brain swelling. With all due respect, I don’t think doing less is going to be effective. My approach of rationally asking people to support thoughtless positions such as “a little mold never hurt anybody” seems to be fairly effective. In other words, I quickly point out the fact that they’re just going off of half-truths while my approach is based upon studies and data.

In truth, I think a part of these types of responses is a mostly unconscious way of saying that my illness makes friends and family uncomfortable. I get it; I wish I wasn’t affected by CIRS. The reason I say this is that out of all my friends and family, only my wife and one friend ever took the time to actually study about this illness and offer up well thought out suggestions. From where I stand, if a person doesn’t have enough initiative to actually spend time learning about what’s going on with me, then I’m sorry, but it’s a waste of my time to listen to their lukewarm conjecture. Wading through the various well-thought out approaches to wellness by people that have spent their lives in the field is hard enough. I don’t have time to make others feel OK by expending more than a sentence or two of effort explaining why what they just said is next to useless. Really, a simple hug would be so much more healing than this type of worthless dribble.

I’ve studied about CIRS, and many other health-related issues, for years. From my perspective, it’s very important to learn the details of this illness. Personally, I think it helps bolster resolve and makes sticking to the protocol easier. It doesn’t hurt that you can also respond to thoughtless comments with questions like “How then would you suggest I raise low MSH (confirmed by lab work) as a result of the leptin receptor sites in the hypothalamus being bound by biotoxins”?

Facing Demons

Just prior to the “wheels coming off my wagon”, I was reading all about the banking system and the industrial military complex. I was trying to figure out what the drivers were behind 911. I mean, I’ve traveled the world and worked with less advantaged cultures. Everywhere I went, people were kind and generous. What would drive a group of individuals to such extremes? Asking this question led me into some very deep and dark holes. The blinders are off now. I bank locally. I hope to one day get rid of my credit card. In contrast to the big food and big pharma approach, we’re working with a local organic farmer trying to find ways to restore the soil biology.

Diving deep into some of those rabbit holes along with being incredibly sick really altered my thinking. I have to admit that for I time, I seriously contemplated whether all the ringing and various other noises in my ears along with the relentless anxiety was a result of some agency using hidden weaponry against me. I know this may sound strange but I knew I was being attacked; I just couldn’t figure out from where. When I reflect on this, it sort of makes sense. If you look at EMF influences alone, we’re constantly bombarding ourselves with high frequencies that come from everything from cell towers, to wifi, to baby monitors. If you don’t think irradiating your body with electromagnetic fields that are more than a thousand times higher than ambient levels is a problem, I’d suggest you do a little research. It was a weird and paranoid time.

On top of the external assaults, I now understand that I’ve also had a hidden enemy within for a long time. I can remember the start of night terrors in my early teens. I don’t know how many thousands of times I’ve been attacked and killed in my sleep. I now understand that this was my unconscious playing out the physical struggle I was dealing with in my dreams.

Needless to say, when you’re hit hard by biotoxins, chemicals, and heavy metals, the perpetual assault can make a person a bit cautious even to the point of paranoid. It did me anyway. For example, I’ve always built storm/fallout shelters in all my homes. Not surprisingly, the world never seemed that safe to me. I now realize that CIRS and other toxins have been with me for a very long time shifting my thinking.

Sometimes when I’m in a reflective mood, I weep a bit inside for the little boy that I was. I recall a picture taken when I could scarcely walk. I stood proudly grinning from ear-to-ear with a straw broom in hand. I loved sweeping. I so wanted to bring Love and Light into this world. Excessive lead levels, antibiotic use at a young age, CIRS, and so on have muted my efforts. What could I have achieved if this body hadn’t been so overloaded? What could we all have been if we’d somehow been able to avoid polluting our World?

Learn to Let Go

In the face of it all, I’ve had to learn to let go at a much deeper level. In a way, the world is a mad place. Our species is really very young, especially in terms of the evolution of galaxies. We’ve got a lot to learn about living in balance with our environment. I don’t know if we’ll get it figured out in time. For myself, I need to be OK with this. Otherwise, where is the joy in life?

In so saying, I’m reminded of the character George Malley, played by John Travolta, in the movie Phenomenon. For a time, George struggled with his new found abilities to see the world in novel and more expansive ways. It made him frenetic. One day, while madly hoeing weeds in his garden and struggling to come into balance, he reached deeply in the soil just before his attention was drawn upward at the swaying tops of tall trees in the wind. At that moment, a wave of peace overcame him. He closed is eyes and took a deep breath. We all need to connect with a deeper truth; to make our peace with this existence.

I don’t know why this world works as it does some times, but I believe there is a “method to the madness”. After all, if we didn’t have adversity, what would ever inspire us to be more? From what I can tell, not much seems to happen without an impetus to move. Today, I try to see both small and large insults as gifts; they’re gifts from the standpoint that they’re a call by Life to continue to grow.

Deeper Compassion

I have a much deeper appreciation for what it means to suffer from physical and mental illness as a result of CIRS. It’s made me more compassionate. Furthermore, the connection between aberrant mental states and adverse health is much clearer. It’s NOT all in our heads. Mental states are simply the manifestation of physical health. When we’re healthy, we are peaceful, inspired, and balanced. We slough off stressful events easily and readily re-engage with Life. This is normal; this is healthy. When I see over-reactions of any sort, the first thought that comes up now-a-days is what physically is wrong to produce that behavior.

In addition to being able to better hear where other people are coming from, I’ve learned to pay closer attention to my own internal compass. I don’t care if I’m ever great at anything anymore. I don’t need to conquer the world. I’m learning to drop more and more of the socially insane approach to life of ever greater levels of consumption as a way of being happy. Today, I’m always looking in and asking myself how I feel. What’s going on inside; where am I at physically and emotionally? In so doing, I’m able to catch much sooner when I’m getting out of balance and make adjustments. As a result, it’s more about how Life wants me to move and less about my own smallish desires.

The Stories We Tell Ourselves

No one wants to be sick, to suffer. And yet, when you look around, you realize that old age, sickness, and death are a big part of this existence. Given this, I would suggest that it’s better to believe in a paradigm that embraces this reality as opposed to one that tries to push it away. I say this for the simple reason that sooner or later, chances are that adversity is going to show up on your doorstep.

So for example, the rephrasing of one’s position toward adversity from statements like “Why does this always have to happen to me” to “I accept this challenge to bring Love into the World” can make all the difference. I would suggest that instead of saying “No” to Life, stretching to embrace Life more fully is not only a more grown-up approach but is in fact, consistent with our inner nature.

I can tell you from everything I’ve learned in these 50+ years that there are a few very basic truths. From what I can tell, one of them is that people carry the seeds of Love. As such, your “job”, so to speak, is to spread these seeds everywhere Life takes you. If you end up in a physical and mental state that is black and seemingly never-ending, know that being human and present to your situation is in itself a manifestation of Love. Know that when you simply pay attention, when you take a moment to listen and see, when you naturally move in a way to bring about greater peace to your aching body, troublesome relationships, the battered Earth, or whatever the arena, that this is all an expression of your inner God given Love. We’re by design built to carry out God’s Love. Our job is to simply realize this simple truth.

Having said this, I’m guessing that there may be questions related to how harsh behavior fits into this view. After all, is it God’s love when a drug addict breaks into my house and steals what little I have? Is it God’s love when I’m wracked in pain and my mind bounces around in a nearly psychotic manner?

To this I offer these two points. First, as suggested, it just makes good sense to make friends with adversity. Seeing adversity as an opportunity to grow or love is going to bring value to your existence. Second, I can honestly say that I’ve never met anyone that naturally wants to do others harm. By this I mean that we’re built for Love. When we fall short, the question that arises for me is why.

Perhaps the person is loaded up on heavy metals. Perhaps they have a genetic weakness that makes them more susceptible to brain chemistry imbalances induced by chemicals. Perhaps they were beaten as a kid because their parents suffered similarly and, in spite of their best efforts, couldn’t break the vicious cycle of violence in their family line. Who knows? What I do know is that a baby that can scarcely crawl will move on all fours to go pick up and hand back a clothes pin that was accidentally dropped by its Mom. Empathy and helping out are natural; we naturally want to engage this world in a caring way.

Don’t get me wrong, I’m not making excuses for bad behavior. What I am saying is that adversity is a part of Life. When it shows up, I would humbly suggest that we have all the tools we need to engage it. Embracing a paradigm that includes this simple truth will make Life worthwhile because we will be engaging it in a way consistent with our inner nature. Each of us has the Love of God within us. Realizing this tendency is as simple as paying attention to what is being shown and finding a way to improve the situation. It’s what we’re built to do. It’s what we’re good at. At a bare minimum, it’s our best shot at being happy.

23 thoughts on “How CIRS Changed My Life”

Thanks for the hug. I could use it. 🙂
I just found out about CIRS when it came into my life, very much uninvited. I’ve only just learned that I have it and thanks to your amazingly informative website, I’m learning what to do about it. I would say it’s in the process of changing my life. I really wish I could say for certain that the change was over. I’m a little scared about where it might end. At least my diet has changed drastically for the better and hangovers aren’t an issue anymore since I can’t drink. Unfortunately I’ve also just been diagnosed with H.Pylori as well so I’ve gone from a somewhat muscular 194lbs to a scrawny 160. Hopefully It will stop there. Throw Hashimotos, MTHFR deficient, and high cysteine levels with a newly aquired erratic heartbeat in there for good measure too. The brainfog is really bad at times and I had to quit my job last year. That was before I knew what was going on and what Hashimotos and CIRS even were. I just thought I was anxious and getting old.
I know I can get though this. I just need to find a doctor that is savvy enough. I havent figured out if my 13000 C4a is from Lymes or mold yet but my doctor finally agreed to let me try CSM so I’m trying to get prepped for that before I dive in…after the Holiday I think.
Thanks again for your contribution to the lucky folks like me with CIRS…and Happy Holidays!

Nothing in Life is certain. I think CIRS challenges a person to learn how to live in the face of real uncertainty. From where I stand, all we can do is our best from moment to moment and let go of the rest.

It sounds like you’ve learned a lot in the last couple of years and addressing CIRS is huge.

Regarding C4a, you can get a NeuroQuant done rather inexpensively to help sort the Lyme versus mold question. You’ll need someone that can interpret the results. I hope to write about this soon.

Make sure to look over the Binders – Lyme section. Fish oil and a no-amylose diet before starting CSM might make sense given the Lyme factor.

Thanks for the reply and suggestions Greg. This certainly has been a rough journey through a dark forrest. For the most part I’m trying to figure this out on my own. My doctor has had the good sense to agree to several pertinent tests but the trail has gone cold as far as treatment. Next up is a Lyme Provocation to pursue the possibility of Lyme, but my Western Blot was negative and my CD57 is 74 which is normal ( as is my VIP at 29.) I would suspect mold over Lyme with the MSH low(<8) and high TGF-b1 (3860).
I will definitely talk to my doctor about NeuroQuant as I have had a little head trauma as well.
Thanks again for providing this all this excellent info.
It's very much appreciated!

I feel a heavy burden of enlightenment & the need to educate everyone I know & especially the ones I love about CIRS. This is the most difficult issue I have not been able to escape. Most people don’t want to get educated so they now avoid me.

This reminded me of how infuriating and bewildering it can be when people don’t want to listen to what we’ve learned. I know when I finally figured out I had CIRS that I just assumed my family would jump on board. After all, they’ve got it too. Nope, its taken years, and although they now believe this is a real illness, they’re still having a hard time taking it seriously enough to follow protocol. It can be heart breaking and so lonely some times.

What I think I’ve learned is that everyone has their own path. There are a myriad of factors that influence everyone’s decision. Initially, we didn’t rip the carpeting out of our house. In part, this was because we were just so exhausted by the years of trying to figure out what was going on, along with the fact that the carpet was only a couple years old. We never wore our shoes inside and I convinced myself we could clean it using QUAT, ozone, and multiple passes. I can’t say for sure its the carpeting, but recent testing has shown that although levels are dramatically lower, some mold counts are still too high. In hindsight, we should have gone “all in” and got rid of the carpet straight off.

I think this is the sort of juggling that anyone faces when they’re dealing with taking on board a life-changing illness. Now-a-days, I just do what I can to help without any real expectation. I do my part and leave the rest up to God. I trust that however it plays out is exactly as it needs to be. When I think about it, how could anything really be out of place in the bigger scheme of things?

Wanting to educate everyone, but especially family, is a struggle because I know they are comfortable where they are and aren’t interested in change even if it would mean feeling better. If I were my brother or parents, at the very least l’d do the gene test. But no. I have decided to be selfish and focus on healing myself and being a resource for anyone who asks but like you, not expecting too much.

We are moving to a less moldy house in a few weeks. I have so many questions about how to clean, how to improve a crawl space and basement’s mold count, and how to maintain your house once you’ve succeeded in bringing the levels down. It feels impossible right now. But I know it will get easier.

Love- there is no more powerful medicine than learning to choose love and focus on spreading light regardless of your personal situation. Adversity always leads to opportunities for blessings- sometimes it just means taking a moment to stop and relish the time we have with those we love- as well as look for opportunities to reach out to others. Thank-you for your wisdom, your constant pointing to solutions and caring enough about others to reach out and be a source of light. You’ve been a critical part of helping my family and I cope with our journey and giving us a way to look forward. Thank-you Greg, we appreciate you more than our words can express.

upside down,
I only have my son, he has been running around for the past year almost two, I was diagnosed with Fibro and ME 10 years ago, but I would have bad days then a good day. Two years ago after replacing the ac, I guess I started getting a lot of mold come up through the crawl space. I found out the house has defective hardiplank and I was there a year before I got sick. I left everything except some of my sons clothes that we washed with borax before washing them here.

I started reacting to his clothes and noticed that there was a lot of dust behind the dryer, the hose wasn’t on properly and have been feeling worse since, I react to the dryer now everything that has been dried in the dryer. The dyer is directly in front of return for the HVAC. Lisa Petrison feels I have cross contaminated the apartment so I am trying to get another apartment. I don’t know how to tell for sure except that I do react to the dryer.

Both cars are very big issue though is how can I decontaminate them. Mine is a 2004 Lexus SUV that may have had water damage when I bought it. He has a honda civic cloth seats. I can get new clothes. Hopefully I can get another apartment. I have had lots of burning in my nose top of mouth and throat. I tested for Marcons and that was negative although I do have a staph infection but it wasn’t bothering me until the dryer incident.

I quit running the HVAC and its cold, eyes crusting and throat, burning since it happened. My credit is shot now, my son is so depressed, he has been staying at a friends house this weekend talking of suicide. I am so scared for both of us and we are all we have. No family; I want to make sure it is from the dust and the thing that I have and not a reaction to the CSM. I have been reading your stuff since I figured out about the mold. In fact reading your stuff helped me figure it out, I didn’t know how to contact you.

Everything here is new but should I throw it away and start over again which I am broke. Or can the new things be saved, I threw out all of the bedding that I dried because I was reacting to it. But the other stuff I don’t seem to be reacting to. Is there a way to clean to make sure I don’t contaminate the new apartment. So ideas about cars, initial reaction to CSM, saving the new stuff. And thanks so much for sharing your story.

I’m really sorry to hear about your troubles. I’ll do what I can to hash out a response but please understand that my time is very limited.

Washers can definitely be mold sources and dryers can be mold traps. A dryer works by drawing in air from the bottom of the machine that is then heated, sent through the clothes drum, and exhausted out the vent. If a dryer is in a moldy environment, it pulls in toxins from the surrounding air and stores them in the amply supply of dust that collects inside. Granted, when the dryer is running, a negative vacuum is created in the unit that sort of contains the outflow of toxins. Still, I think opening and closing the door of a moldy dryer could be enough to contaminate a new space. For those interested, see Large Appliances & Mold for details on cleaning.

However, from what you said, you didn’t bring your washer or dryer with you so the question is whether the moldy clothes you brought with you and washed could have contaminated your new apartment. Perhaps a little, but I just don’t think that it could have been that serious. It sounds like you did a great job leaving porous materials behind and with cleaning.

Certainly washing the clothes removed a lot of toxins. Also, it sounds like the dryer hose had more of a loose connection as opposed to being completely off. As such, most of the dryer air was being exhausted. You could take a Swiffer cloth on dust collected near these machines to put your mind to rest. If it comes back OK, I’d just make sure to run a good HEPA air filter and consider letting the issue go.

For what it’s worth, I don’t think we can ever be told that we can get through CIRS enough. Your son is young. He will bounce back. It’s just a question of getting clear of toxins and systematically treating. Sure there may be other outstanding issues, but addressing CIRS is major.

Addressing sleep, gut health, MARCoNS, and supplements like liposomal GABA can help sooth jagged nerves. I can tell you that somewhere around 50% of my symptoms were actually from gut issues and MARCoNS. As mentioned, I’ve really cut way back on all carbs, have a simple diet, and also take Wild Oregano oil as a stop-gap to address SIBO (Small Intestinal Bacterial Overgrowth) symptoms. Eventually, I’ll get serious and tackle it in earnest. Anyway, my point is that it’s really hard to pinpoint what’s driving symptoms as you’re well aware.

By the way, if you bought new mattresses, did you bag them or buy ones that were flame retardant free? New fabric furniture and mattresses are loaded up with these chemicals. Is your apartment a few years old so it’s off-gassed? I’m assuming you tested the new apartment for mold before moving in.

Thank you for your response. It was a new mattresses, new apartment, no one has ever lived here, I think they used it as a model. We did cover the mattresses double layer with plastic prior to any of the dyer stuff happening. Mr doctor, has written a letter to the apartment complex that they received today. She has asked them to move me to another apartment but the whole complex is 6 months old. The washer and dryer brand new.

I have made arrangements to switch mattresses out, they agreed because I am in the time limit. I cleaned all the dust. That put me down for days. But the fact that my son is sleeping on a couch somewhere else. I basically have no help, and very lonely. I was doing ok on the CSM after the first week. Now I just feel terrible. I am suppose to start the VIP next week. But getting the cars decontaminated seems to be such an obstacle. My son is waiting for instructions but I have none.

I don’t know where else to go, I have asked everyone. I was sent Mold bomb and then was told don’t use those. I am depending on a couple of old friends who work, have their own family and obligations. I am losing hope everyday. I actually felt good when I was at the hotel. Now I am am barely maintaining, Thank you so much for your response.

This is a difficult situation for me to respond to. There is a reason good doctors spend their entire lives learning how to treat challenging cases. A good doctor will spend hours getting your history. They’ll look over you lab work. They’ll organize all your symptoms based upon events and timing. They’ll then order more lab work. Based upon all of this, they’ll give recommendations that quite likely will have to be changed based upon your response.

Treating CIRS is no trivial matter. On top of this, moldy people tend to be even more irrational and really temperamental. It’s to be expected given the hormonal imbalances, brain swelling, and high levels of anxiety.

Having said this, of course I care deeply and offer up these suggestions for you to consider:

VOCs – You’ve been sick for a while. Chances are that your ability to detox is hampered. Personally, there’s no way I’d spend any real time in a new building. When I travel, I always go to hotels that are at least a few years old. You can test VOC levels as mentioned in Beyond Testing. It’s better to test than guess.

Loose plastic isn’t enough to contain flame retardants. I’d recommend non-breathable zippered mattress bags. Test them by trying to blow air through the fabric. You need to contain those flame retardants.

Update August 19, 2017

Recently, I had a bad experience with a contaminated mattress at a rental property. I’m not sure if the mattress was sprayed with chemicals for bed-bugs, was contaminated with mold biotoxins, or otherwise. Whatever the source, the toxins in the mattress really lit up my sympathetic nervous system. In spite of the fact that I had proactively put the mattress into a non-breathable zippered mattress bag, all sorts of bizarre thoughts came up as I laid in bed wide awake.

In an effort to make the mattress “safe”, I wrapped it in an additional 4 layers of heavy plastic. This worked for two days before I started reacting again. I concluded that I would not be able to make the mattress work and switched to a non-PVC air mattress that was recommended by fellow moldie Kim Goodwin. At last, I started sleeping well.

My take-away from these experiences is that non-breathable zippered mattress bags appear to be able to keep mold toxins out when not in use in a damp storage locker. However, when mattresses are in use, a lot of air moves in and out of them as body weight repeatedly compresses and decompresses them. Given my experience, no amount of wrapping of a contaminated mattress is going to keep toxins encapsulated. Furthermore, even if you had a mattress in a non-breathable bag while in a moldy environment, if the mattress was used, it’s quite likely that the mattress is contaminated by the air that is invariably drawn in through the zipper and seems.

Update End

Diet – It’s important to cut out inflammatory foods. This begins with grains – Dr. Davis in Wheat – The Unhealthy Whole Grain. Many have trouble with dairy, eggs, soy, peanuts, tree nuts, and the like. Chances are your gut needs help so stopping grains and sugars that feed the wrong microbes is essential.

Mold – You didn’t mention any of your lab results or whether you tested your new place for mold. It’s important to make sure you have CIRS before you start going down that road. This can be done using lab work alone as discussed in Diagnosing Biotoxin Illness Using Labwork. If you do have CIRS, you absolutely must do a HERTSMI-2 test, at a minimum, to confirm your new place is OK.

EMF – I’d look to see that you’re apartment isn’t near the bank of smart electrical meters for the complex. I’d also turn off electrical breakers at night. If you can afford it, I think an EMF canopy could be helpful. A Trifield 100XE EMF Meter is a handy tool to help assess the EMF situation. Take a look at Lloyd Burrell’s video on How to Use a Trifield Meter. I’m sure that complex is just buzzing with Wifi given that everyone now-a-days runs a router in their homes/apartments.

CSM – It sounds like you don’t know if you’re reacting to CSM, mold, or something else. Try taking a look at Side Effects & Complications. Some people just can’t tolerate CSM in the beginning. Also, even though Dr. Shoemaker only recommends this for those with Lyme, gluten antibodies, or really high TGF-beta 1, I’d seriously consider taking omega-3 fatty acids (2.4g EPA plus 1.8g DHA) and going beyond his recommendation to be on a no-amylose diet by avoiding all grains – except maybe rice. Fish oil helps with inflammation too.

You can always stop CSM or switch to Whelcol to see if symptoms improve. Adding in some clay and activated charcoal never hurts and will help bind other toxins. It’s hard when there are several factors involved like possibly being exposed to mold, new apartment VOCs, CSM, and the like. As much as possible, try to only change one variable at a time. It’s easy to say but hard to do. By the way, you mentioned moving on to VIP shortly. I’d strongly recommend you get lab work done confirming C4a and TGF-beta 1 are normal along with having cleared MARCoNS – at a minimum.

OK, that’s all I’ve got time for. I’ve now spent several hours trying to do what I can to tell you that I care about you and wish you well in the form of these two replies. I hope it’s enough and that there is some useful information in here for you. I wish I had more time and energy to answer questions. Keep looking for good doctors and know you’re in my prayers.

PS. Drive with the windows cracked open. I doubt that your vehicles are the main problem – you said you were doing better when staying at a hotel and you must have been driving your car then. I do talk about how cars can cause symptoms in Clean Driving Machine. However, unless the car was super moldy, I doubt it could cause the types of symptoms you’re talking about. I definitely wouldn’t use a Mold Bomb. If the place is so bad you need to bomb it, move out. Killing mold is not going to solve the problem for those with CIRS. It’s the super small biotoxins that are the real killers. Regarding mouth burning, see Kim G’s Comment.

Please do write back in a few weeks and let us all know what helped with symptom relief. I know I’d like to hear and I’m sure many others would too. If the Comments are closed, you can use the email address at the bottom of the Home page and I’ll add them manually.

From my experience, when I’m reacting, everything seems “bad”. I think when a person’s body gets highly inflamed, it makes a person super sensitive. For example, I took a bad mold hit a few days ago. When I tried to evaluate what was driving symptoms, I really noticed the impact from MARCoNS that I now have for the third time. I could tell how this warm winter weather was a problem. I really noticed how badly the local shop smelled that I got the hit from when I visited it a second time. As it sounds like you know, whether it’s inflammation from chemicals or mold, it makes a person really hyper. This isn’t surprising because we know damn well we’re being “attacked” but just can’t figure out the main driver.

The only approach that I’ve found that works is to use logic. I know that for some, this simply isn’t their mode of operandi. These are more of the “right-brain” folks. However, my personal experience is that trying to rely on symptoms when a person is highly reactive to tell what’s wrong is nearly impossible to do.

In your case, you said you felt better when you were staying at a hotel. This means that although your cars may be an issue, I doubt that they are driving symptoms. CSM could certainly be an issue especially if you got worse after about a week as this typically is when people start reacting. You can stop CSM and see if the situation improves. It may at a couple weeks for your system to settle down from moving those toxins.

For sure, take activated charcoal and clay in the interim as they’re always helpful. If your son is suffering similarly and feels better away from the apartment, this is telling. If you can go back to the hotel for a few days and start to feel better, this would be useful information. Although, you’ve been ill for some time so I’m not sure how quickly your body will clear. This is the minefield all of us with CIRS have to learn to navigate.

So logically, Dr. Shoemaker has shown that statistically if your apartment has a HERTSMI-2 less than 11, it’s probably OK. It’s not like we have to live in a perfectly sterile environment. It just has to be fairly mold free. As such, I really don’t see the toxins on your son’s clothing as the main driver here. Even Lisa Petrison says that simply rinsing off in the shower without soap is enough to wash off toxins. You sent his clothing through the washer with I’m assuming some soap like Borox. Those clothes should have been relatively clean by the time they hit the dryer.

Were they perfectly clean? No. However, they should have been clean enough. I suppose if you had really high levels of stachybotrys I might reconsider, but otherwise this seems unlikely. On the other hand, someone that’s been sick as long as you have almost certainly will have some level of chemical sensitivity. Recently, I took a trip out to Nevada to look around. I sometimes think I’m nuts for trying to stay in Wisconsin and remediate our house. When I was there, I stayed in a new hotel. The road noise was really loud so I took the mattress off the sleeper sofa and slept in the bathroom. (Yes, it was a “nice” hotel room as part of my wife’s work.)

It had already been a stressful day with the flight. A couple hours into the night and I woke up lit up like a Christmas tree. Oh, no. I loaded up on turmeric, took more melatonin, took an Aleeve and slept fitfully all night. I thought it must have been a mold hit from the airports. The next day I felt better by late morning. That afternoon, I was sitting on the pullout sofa and noticed I was starting to feel anxious again. Then it dawned on me, it was the damn chemicals in the couch. I’ve experienced this before sleeping on blow-up mattresses. Those chemicals really make me depressed and more “suicidal” than most mold hits – except stachy.

The bottom line is I’d seriously look at the VOC issue. There are so many accounts of people that have gotten sick from being in new buildings. It’s really common. I know this is probably the last thing you want to hear but that’s what the pieces add up to for me. The second most likely is a reaction to CIRS. Next comes mold followed last by EMFs. Of course gut issues can drive symptoms too but if you’ve felt OK at times on your current diet, then this is unlikely.

So write back and let us know what you find out. Please, no more questions though because it’s just too heartbreaking for me. Also, as you can probably tell, once my mind locks in on a problem, it’s hard for me to get it to disengage. I suppose in part it has to do with me wanting to feel accepted too and to feel like I’m making a difference. As noted, it’s also really difficult because there are no easy answers and so often, I feel like the advice I have to offer gets lost in the confusion. Be well, Charleah.

Thank you for this post and thank you for not just looking at how CIRS has negatively affected or challenged your life. Of course it’s hard and of course there are a ton of changes, but many of them are positive.

I was diagnosised just a few weeks ago and I have deeply appreciated your website. Finding information on this disease isn’t always easy. I was sick almost 10 years before I literally stumbled across the symptoms for CIRS and thought, “that’s me!” Your website helped me bide my time as I waited for the doctor’s appointment that led to the diagnosis.

My most evident changes thus far:
1. I look up a lot, looking for water damage. When I find it, I stare at it, trying to determine if it is old or recent. Then I’m assessing how I feel.
2. I’ve rediscovered joy. My husband and I feel lighter. We see a future again. I’d gone without a diagnosis for so long, we had all but given up.
3. It’s not my fault. Before, I blamed myself for being sick: if I’d only have more self-control and not eat x, y, or z; if I’d only been more organized; if I’d only researched the right diseases or found the right doctors; if I’d only not gone to graduate school. Now I know because of my genes, I was probably always going to end up here.
4. My body didn’t fail me. It’s working hard to set things right, but it just doesn’t have the right tools. Supporting it with a good diet and less stress not only helps me feel better but also illustrates to myself that I recognize my body’s hard work.
5. Vallidation. These seemingly odd symtpoms are real and not just in my head.

Please keep writing and researching! Your work has been so helpful to so many.

Hi Greg,,
We have communicated in the past on several topics. Your site has always been a Blessing. I have lyme, babesia, and mold, 11-3-52b, etc….

Your article rings true in many aspects relative to my experience with Lyme and mold. Letting go of the fast track is one of the hardest things to do in today’s society. As you mentioned, a serious, protracted and misunderstood illness makes it a necessity for survival.

Regarding what you said about others understanding, spot on. I’ve experienced the same thing and have come to the same conclusions. I used to try to “convince” them through studies and medical explanations, but found it fruitless, and being met with a lot of opposition. My energy is spent better elsewhere. I don’t try to convince the close people in my life any longer. I have to admit, that 3 years ago I would have trouble understanding the amount of physical and mental overload this causes one to experience. Like you I was very active, working and exercising hour after hour with ease. It amazes me now what the healthy body, as God created us, is capable of. What you mention about stress, so true. The health response is to take a hit and move on. If this is not happening either mentally or physically,something is terribly wrong. CIRS, by its very nature incapacitated our ability to handle stress through hormone dysregulation, immune dysregulation,and in my case endocrine dysregulation, rendering our stress response and stress threshold very low. This was a big change to mentally accept.

Regarding the carpeting, we have just 2 rooms with carpeting. One , my old study,which I only go in for a few minutes a week. I know air samples for mold are not useless, bit the mold inspector did do this. These rooms did have elevated mold spore counts relative to the hardwood floors. I’m thankful to our Lord that all the other rooms were renovated several years before I got ill.

Lastly, but most importantly, my faith in Christ over the last 2.5 years has grown so much for the better. The only true source of Peace that I find is from being in the Presence of God during devotional time. And as you mention, this Love is God and Jesus’ saving grace. God does put us through adversity to grow in faith, rely on Him more, and to Listen to Him and follow His plan for our life. As you have done, I am also redefining my roles in life as a direct consequence of lyme and CIRS. More importantly, the roles have to align to what he wants us to do. Sometimes it takes something as severe and misunderstood as CIRS to set us on the path that He had in mind for us all along.

Hi D,
It’s good to hear from you. Thanks for that comment. Learning to live with CIRS is a real challenge. I’m glad to have the support of you and all the others that have written in with words of encouragement. Be well.

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